Is This a New Form of Hell??

Hi everyone,

I am a 39-year-old, married with 3 children. I was diagnosed with MS after going blind in my left eye in 2015. I actually think I have been carrying MS around for years before my diagnosis, as I would have episodes of numbness in my legs or burning sensations randomly on my legs.

Really frightening vision issues

It was really, really frightening to have my vision slowly stripped from my left eye and the pain was horrendous. I was given steroids to combat it, but due to an initial misdiagnosis, my eyesight has been lost in that eye completely.

When I was first diagnosed, I was very curious about MS and it's unpredictability. But after suffering from my first relapse in 2017, I just want my life back. The relapse started with a feeling like my feet were actually on fire on the soles, yet ice cold to touch. This exasperated until I couldn't walk at all. The pain was excruciating, unbearable. If I could have had my legs taken off, I really would have! The pain travelled from both feet, up both legs and hips. I still have the pain in my feet, legs and hips now, although to a lesser degree, as this relapse was left untreated by my neurologist and MS nurse. I was left to suffer.

The pain is unmanageable

This disease is so scary and the pain is unmanageable. Completely unmanageable. And how do you tell someone, that you can't go out because you now walk with a limp and a stick and feel embarrassed? My neurologist didn't go a long way into explaining the HUGE impact this disease can have on people's mental health. Pain, constant pain, really drags you down. It got to the point where I had such a terrible quality of life, that I truly felt like ending it all. Yet having joined many sites for MS, I find that there are others who have to go through the same pain and all the rest of it and they are persevering. So must I.

Swamped by fatigue

Unfortunately, the MS nurses in this district will see you once a year, if you are lucky and you get to see your neurologist once in a blue moon. I am 3 years overdue for my next MRI and I know that there will either be more scars or ones that have grown.

I find it difficult to cope sometimes and my family does too. They have no idea the pain I carry around every day and the constant feeling of fatigue. Actually I would honestly say, that fatigue is just too tame a word here. Being swamped by it is something I would put. Fatigue that can and will absolutely floor you. Ordinary people have no idea how any of this feels and they are very quick to judge sometimes. Even one member of my family decided to call me a layabout!!! You can guess that I cut this person completely off. We don't need people like that in our lives, making things worse, do we??

A painful, scary, and daunting journey

So my journey with MS, so far, has been painful, scary and daunting, and I don't want to think about what might come with my next relapse. I just hope to keep on with a healthy diet, yoga (if I can) and try to keep smiling through it all. It is hard some days when you don't even have the energy to get out of bed, but my family is there to push me and get me going.

The impact MS had had on my marriage

My husband has found things pretty hard going, as much of the time pain is not a turn on for me, or I am just far too tired to get anywhere near aroused. He has educated himself a lot better over the years, thankfully, and now we are set to my schedule. The poor man, it has to be difficult. It is not that I don't find him attractive either, it is more like my connections within myself just aren't there, as pain and exhaustion seem to override anything else except a very early night. I haven't yet been put on the DMDs but very soon, if I ever get the MRI I need at the moment, I will more than likely be put on them. I will take anything if it is going to make my quality of life better...actually, maybe not anything, lol.

So, so far it has been hell, so hopefully, I can only expect things to get better, but that is perhaps far too optimistic?

A shell of who I once was

As for my children, I have to say, this generation couldn't give a fig!! I am still mum to them, still the person I was. I suppose it is a self-protection mode for them, to pretend MS doesn't exist. We all have to live with my MS, but I get to feel every moment of it. I am glad my children still view me this way because I honestly feel like the shell of the person I once was and MS has taken that person from me. I am sure there are other people with MS, who share the same sentiments.

This autoimmune disease runs the show

All I want is my life back, but now it feels like the show is being run by this autoimmune disease that I didn't want and never asked for. Still, I'm not dead yet, which means I gotta get on and live my life as best I can. Even if it is hard to push on through. Like wading through toffee sometimes. In the mind as well as the body, eh? The other thing I have been experiencing is that some words that I can spell fluently, suddenly I can't. And my sentences will come out as absolute gibberish. I can't seem to find the correct name for things, like a cooker or fireplace. The name for them just disappears from my brain. It is very frustrating and upsetting sometimes. It seems that I can now only concentrate on solely one thing at a time, or I get confused and distracted. Utter madness! Lol.

So, that is my experience for now, there will no doubt be more to come. Thank you for taking the effort to read this hodgepodge. If it makes sense, then I have a small win! Lol. Have a lovely day to all of you who are in this boat with me and let us try to keep it afloat. My love to you all.

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